Improving Access to Standardized Fertility Preservation Information for Older Adolescents and Young Adults with Cancer: Using a User-Centered Approach with Young Adult Patients, Survivors, and Partners to Refine Fertility Knowledge Transfer

J Cancer Educ. 2018 Jun;33(3):528-535. doi: 10.1007/s13187-016-1108-0.

Abstract

Adolescent and young adult (AYA) cancer patients under 40 should be made aware of their fertility risks and preservation options throughout their care. However, discussions on fertility preservation (FP) do not routinely occur. With a dearth of FP resources, oncology providers may lack knowledge around FP. Thus, informational needs can be unmet, leading to anxiety and distress in patients. Provision of pertinent and timely information can help patients cope better with their diagnosis. FP pamphlets were developed for men and women with cancer. A cross-sectional in-house survey, using convenience sampling, evaluated the pamphlets' effectiveness and measured ease of understanding, acceptability, and perceived utility. Patients and partners were also asked to provide recommendations and complete the Short Test of Functional Health Literacy in Adults (S-TOFHLA) measuring health literacy level. This helps determine if health literacy influences perception of pamphlet effectiveness. All participants (n = 56) reviewed both pamphlets. Fifty-four participants (96 %) found the pamphlet for men useful, while 29 participants (52 %) improved their male fertility knowledge. The pamphlet for women was useful for 52 participants (93 %) and improved knowledge in 35 (63 %) of them. Although the majority of participants had adequate health literacy (98 %), there was insufficient sample diversity to determine if health literacy influenced the pamphlet's effectiveness. Participants indicated preference in receiving verbal (73 %) and written (66 %) information over watching videos or in-class education. They recommended including fertility clinics, financial resources, and statistics in the brochures. These FP pamphlets were concluded as effective in supporting patients in making FP decisions.

Keywords: Adolescent and young adults; Cancer; Fertility; Fertility risks; Health literacy; Patient education; Patient resources; Preservation; Preservation options; Supportive care.

MeSH terms

  • Adolescent
  • Adult
  • Comprehension
  • Cross-Sectional Studies
  • Decision Making
  • Female
  • Fertility Preservation / methods*
  • Health Knowledge, Attitudes, Practice*
  • Health Literacy
  • Humans
  • Literacy
  • Male
  • Medical Oncology
  • Middle Aged
  • Neoplasms / epidemiology*
  • Pamphlets*
  • Patient Education as Topic / standards*
  • Patient-Centered Care
  • Sex Factors
  • Survivors*
  • Young Adult